Book created by kids in the HPS community available

A book illustrated by kids at the 26th Annual HPS Network Conference, under the organization, leadership and help of Sandra and Cassandra Mendez, is now available as an incentive for a $25 or more donation. What Makes Me Unique, Makes Me Rare can be obtained at: https://www.facebook.com/donate/397702131047949/10205561629716855/ The kids and teenagers attending the conference illustrated what they felt made them rare, and then Cassandra Mendez wrote the words and made the digital copy. Her mom,...

Missed the conference survey? Here’s your chance to help make the conference even better!

Attending conference can we a whirlwind of events. If you didn’t get a chance to complete the conference survey while you were at the conference, you can do it now online. Completing the survey helps us improve the conference in the future. It also helps us collect data we need to try to attract grant funding and sponsorships to offset costs. Please complete the survey here: https://www.surveymonkey.com/r/conferencesurvey  

HPS Network celebrates its 26th Annual Conference

    The HPS Network and community celebrated togetherness at the 26th Annual HPS Network Conference, held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. Themed, “Life is Sweet When We Are Together” the event attracted approximately 300 people affected by the Hermansky-Pudlak Syndrome (HPS) type of albinism, their families, physicians, interested researchers and supporters. Attendees shared stories about living with HPS, listened to medical experts explain key points...

Resolution introduced in Congress to support Orphan Drug Act

Representatives Butterfield and Bilirakis introduced House Resolution 242 celebrating the success of the Orphan Drug Act and calling for continued support of the legislation. Before the legislation there were only 34 FDA approved treatments for a rare disease. Today there are more than 750 and counting. More than 90 percent of rare diseases are still waiting for an FDA approved treatment. Please ask your Congressional representatives to support the resolution.

April 6th to be Hermansky-Pudlak Syndrome Awareness Day!

This year the Hermansky-Pudlak Syndrome community is celebrating the first-ever Hermansky-Pudlak Syndrome Awareness Day! The day is devoted to generating awareness of the syndrome, as well as awareness of the problems we must overcome to find better treatments and a cure. Keep checking the HPS Network social media for the launch of our awareness ribbon. We hope you will also support our online social media campaign. The HPS Network’s facebook page is: https://www.facebook.com/hpsnetwork/ You...

Puerto Rican Senate to hold hearing on Bill 1127

The Puerto Rican Senate will hold a hearing to consider Bill 1127 that would make changes in coverage for those with Hermansky-Pudlak Syndrome (HPS) and other types of albinism that are insured by Reforma, the island’s public health care coverage. Advocates for HPS on the island are asking supporters to attend the hearing on Feb. 12 at 9:00 am at the Annex of the Capitol. Hilda Cardona and Dr. Enid Rivera have advocated for this legislation that would, among other things: Extend catastrophic...